A mother of six disabled children approached a
rehabilitation centre asking for help. But an official told her she should have thought
about not conceiving more children after doctors detected genetically linked disabilities
in her first child  the result of a marriage among first cousins, a common issue in
Jordan.

In a nation of 4.5 million people, Jordan has over
130,000 citizens suffering from various forms of disabilities, including mental and
physical retardation, according to figures released recently by the Ministry of Social
Development

This, doctors and social workers say, is placing huge
financial constraints on the country*s limited health, social welfare and education
infrastructure, costing it millions of dinars on the treatment of mostly
genetically-induced disabilities.

Social workers blame the relatively higher figures of
disabled Jordanians on poverty, social ignorance, accidents and consanguineous marriages,
a widespread traditional practice in Jordan.

A 1982 population-based study of consanguineous
marriages in Jordan, which surveyed 2,000 households, found that 32.03% of marriages were
among first cousins, 6.8% among second cousins, 10.5% among distant relations, and 50%
among no relation.

The study, conducted by Sami Khoury a specialist in
community medicine at the University of Jordan, and Diana Massad, a research teaching
assistant in community medicine at the University of Jordan, showed a correlation between
education and consanguinity.

Dr. Khoury told the Jordan Times that marriage between
first cousins increased the risk of infant mortality and congenital malformation, though
this was not a general rule.

"Malformations are produced whenever there is a
gene in the family which carries malformation," he said in an interview.

His Royal Highness Crown Prince RaŽd, who over the
years has emerged as Jordan*s main advocate for the disabled, underlined the need for
couples to conduct genetic tests before they tie the knot to help avoid further
disabilities through early detection of such possibilities.

The National Council for the Welfare of the Disabled
Persons (NCWDP), which among other things is trying hard to promote such pre-marital
medical tests, is facing an uphill battle in a society that still shuns such moves.

Doctors have proven that first cousin marriages could
cause a host of disabilities which could take up to five decades to detect.

"Conducting premarital tests is a [socially]
sensitive issue", Prince RaŽd, head of the NCWPD, told the Jordan Times in a recent
interview.

"Though we respect the privacy of citizens, it is
our duty to propose the idea of pre-marital tests to help avoid further
disabilities."

In 1994, the Ministry of Health made it obligatory for a
couple planning to get married to conduct a pre-marital medical exam. But it left it up to
the couple to decide if they wanted to pursue their plans if genetically-linked diseases
were detected in the tests.

However doctors and religious clergymen have said these
tests have been largely ignored.

"Many people tend to believe that what God gives
them is what they deserve," one doctor said. "Hence, they do not really care if
pre-marital tests show a high chance of disability in their children."

Prince RaŽd, the chief chamberlain, said disabled
people in Jordan enjoy the same constitutional rights granted to any other citizen under a
1993 law for the welfare of disabled.

"It is their rights as citizens of Jordan to become
part and parcel of the community," be said. "It is important to regard every
person with a disability as a citizen of the Hashemite Kingdom of Jordan. He/she should be
treated with respect, kindness and a genuine feeling of love."

The law granted disabled people rights in terms of their
integration into the general societal life, including education, medical treatment,
training and rehabilitation, employment and a suitable environment that allows them
freedom of movement.

Prince RaŽd stressed the need to apply the building
codes rules issued in a 1997 directive to provide facilities to the disabled when premises
are build and new roads are opened.

"Any new building or structure must have all the
necessary features such as lifts, parks, signs, bathroom fixtures, telephones and other
facilities to ensure the safety of the disabled and ease his/her movement" he said.
"Any organisation which does not abide by this specification will be heavily
fined.".

Basil Hourani, director of the Jordanian Sport Centre
for the Disabled, said a national strategic plan should be developed to help limit
disability, including launching public awareness campaigns.

He said Jordan lacks adequate rehabilitation centres to
handle the large number of disabled people, especially in remote areas of the country, and
faces a shortage in specialised staff.

The Kingdom has 117 institutions for special education
tackling various forms of disabilities.

The relatively high cost of buying equipment for the
disabled, such as wheelchairs, artificial limbs and hearing aids, are a major hindrance to
efforts to improve their lot.

Prince RaŽd urged non-governmental organisations (NGOs)
to play a greater role in helping the disabled.

"The past five years have witnessed a great change
in terms of awareness among people regarding the capabilities and potential of people with
disabilities."

This was largely aided by the activities of the Jordan
Sport Federation for the Disabled which for the past 15 years has used sports activities
to promote their cause.

Through it many disabled Jordanians have taken part in
local, regional and international sports tournaments.

"Winning awards, prizes and medals have brought
about a change in the community*s perception and attitude within a very short space of
time," Prince Ra*d said.

Conference on integrating disabled into
society ends

By Suha Maayeh
Special to the Jordan Times
May 6, 1998

At a two-day conference entitled "Changing
Disability Services in a Changing Society" ended yesterday by examining means of
integrating people with special needs into the community.

Patricia Ericsson, a consultant from the Swedish
Organisation for Individual Relief (SOIR), which organised the conference, told the Jordan
Times that the seminar was held to mark over 30 years of Swedish work in Jordan.

"The foreign speakers who discussed different
aspects of their research focussed on how [disabled] services are changing to meet the
demands of the changing society," she said.

"ln all societies there are many cases of mental
retardation. The SOIR has decided to leave the institutional approach and integrate people
with special needs into society" Ms. Ericsson added.

The SOIR is a private, non-governmental organisation
(NGO) founded in Sweden

which aims at helping individuals who cannot obtain
relief through other sources. It started its activities in Jordan in 1966 at the request
of the Ministry of Social Welfare.

"We have been working with mentally retarded people
in several countries in the Middle East;" said Orjan Ekman, SOIR chairman. It*s
an important part of our work to provide training for students and staff working in the
field."

There are special teachers from the SOIR who are working
with community-based rehabilitation projects in eight refugee camps.

"We want to open services close to where people
with special needs live and have teachers with them to help them" Mr Ekman added.

He stressed that severely mentally retarded people are
neglected in comparison to other groups with disabilities.

"If you take different cases of disability across
the world, the mentally retarded receive low priority, and the severely mentally retarded
come last," he said.

Wael Masoud, dean of Princess Rahma College for
Social Work at Balqa Applied Sciences University, said it is important to integrate people
with special needs into society. Dr. Masoud explained that a child with special needs
should be offered services from the community, a new trend across the globe.

"It is our role to qualify teachers in terms of
teaching methods and acknowledging the special needs and how to deal with them," Dr.
Masoud said.

"It is important that schools accept people with
special needs as it is difficult for children living in remote areas to obtain their
education," he added.

Dr. Masoud highlighted the importance of psychological
support for the families and providing them with adequate information because they are an
essential part in the process of integrating their children into society.

The conference was organised in conjunction with the
Ministry of Social Development and the National Council for the welfare of the Disabled.